New Rheumy

New doctors are always a tense encounter, even if there are no medical complications in your life.
I was both excited and nervous when my Rheumatologist appointment finally came around ( had to wait almost 2 months from when I called for an appointment).  I know that this will be the primary doctor I work with for pain management and staying as active and strong as possible.  In my mind, I wanted her to be well informed, have things to teach me, as well as listening to my point of view, research and experiences thus far.

I think it will work out well. She was informed about EDS, and told me one or two things I did not know.  She taught me that my right hip popping and clicking( which it has done since my teen years) may not be a tendon problem, but might be joint deformation or damage. We are getting an XRay as a baseline, so we can track any changes and better anticipate a course.  She did a thorough joint exam and confirmed that the joints where I currently have the worst pain were cases of tendinitis, and that I should treat any new points as we move forward as if it were tendinitis, and not just a general ache to ensure faster recovery. Some of it is in joints that have been active for so long that I did not realize it was an issue- I had just adapted to it. It was good to have it pointed out .  I say once again- thank $Diety for refreezable cold packs ;-0

She was a little too fast to offer meds and I had to push harder than I liked for alternative treatments.  It was good not to have to argue when I asked for two different doses of Naproxen ( wanted a lower one for good days), but kind of scary how fast she was writing a script for more serious pain killers. I got it filled, and hopefully it will be a bottle that just sits in the cupboard unused for a long time.  Once I pushed for things to try to try to improve, she wrote a script for PT as well. [side note: I have had my PT eval and have my first session in the pool next week. I will write more on PT after that- but the eval session has me very excited] Time will tell, and hopefully we will get on the same wavelength quickly.

I was very encouraged by the fact that she was excited to have me see an EDS expert in June, and that she purposefully made our next appointment for AFTER that point in time, so she could learn what he thought and take that into consideration for my treatment plan.  Hopefully his words will help shake her out of a “you know we can not cure this” mentality and up into my thought path of “can’t be cured, but impact can be alleviated”.

All in all, it is nice to have a new rheumy, and I think we might get along OK.

Medicine Madness

I am not a person who lives a structured life well. I work at odd hours ( for way too many each day), take breaks at odd hours and used this to balance having a career and being a mom. I ave been blessed to have jobs that are extremely flexible and have carved a way of life that supports this. 
Now my Biology has decided I need to work to a different drummer. Trying to balance this, stick to the routine that my body wants and not go crazy is my newest challenge. 

I have been taking 2-3 pills per day for my Hashimoto’s for some time.  It sounds awful, but I have a great, balanced routine going. I do 5mcg Cytomel first thing ( 5-6am), get my day started,  stop eating at 9am, take Synthroid at 11am, eat any time after noon again. If the day is long or very active, sometime in the afternoon I take another Cytomel. Most days I do well without it.

Now add in this latest challenge, and taking Mestinon around the clock.  For about a week, the Dr. has had me on 60mg every 4 hours around the clock… and it needs to be taken with food.  I have been managing OK by setting multiple alarms on my cell pone and taking mestinon at 12/4/8/12/4/8.   In the last day or so, I ave started having some sideffects from the Mestinon- muscle twitching, cramps in foot/calves and forearms. Nothing killer, but enough to want to play with med schedules and see if I can back off without losing functionality from where I am. If this is MG, incidents can come and go with varying intensity. I would prefer to be at minimum drug needed and have ability to increase if needed. It is very true that I am nowhere close to “normal” functioning for me,  but I am at the max dose that the neuro doc is comfortable with. Further advancements are going to have to come either from time, or some other med/treatment combinations to be decided when the diagnosis is finalized and we move forward.  Luckily, I got permission from him to mess with my med schedules, as long as I do not do anything closer than every 4 hours.  If I can get the same level of functionality from fewer pills for now, I will mark this as a success.

Since there are so many pills  involved, I would prefer to have something regular and easy to remember– but I would also like to have something that gives me the flexibility of a slot where I can “add in” on really active days– like that reserve second cytomel.  I am really grateful for Evernote– where I have started a notebook just to track symptoms and will be able to look at patterns and find the best timing to stay strong. Sometimes I wonder why House does not use an electronic whiteboard, where he could pull up patient charts, data graphs side by side with hand written notes he makes.  Maybe it is time to have House go hi-tech. Should we write in a suggestion to the show for a diagnostic differential dashboard??